Hello all:

I am 50 years old
I have 4 kids, ranging from 19 years old down to 8.
I have never smoked
I do not drink, ever.
I live a very clean healthy life.

Diagnosis yesterday - on a beautiful snowy day, that this thing under my tongue is in fact cancer.

I instantly went into my normal mode of - "ok, how do I fix this one".
Turns out I am not in control.

Going for CT scan tonight. Surgery next week.

1) wish I had more life insurance.
2) wish I had more $$ to leave my family.

So if I survive - am I professionally at a disadvantage?
Will I go into surgery assuming the doc will take just the thing that is the size of a dime and come out missing my tongue?

Talked to my kids last night - unquestionably the hardest thing I have ever done. Before last night I was invincible.. superman.

I am not afraid....
I am worried and sad for the other people in my life who count on me for so much.

So I don't know if this is what the forum is for. But there you have it.

for now.
Scott

Sorry to hesr your news Scott. Hope you will pull through xxx

Scott,

JMO but I would get at least 2 opinions and at least 1 from a CCC, comprehensive cancer center before I would decide what treatment I allow.

Scott, welcome to OCF! You will find the best info and support about OC here. Read and absorb the info you find here and also on the main OCF pages. It will help you to understand that a diagnosis of OC does not automatically equal a death sentence, neither does a recurrence.

I LOVE the "just fix it" mode you went into when hearing your diagnosis. Thats exactly what I told my oral surgeon when he told me my bad news. If only it was that easy to fix. While it may not be easy going thru surgery and/or radiation with or without chemo it is doable and can be done. Sure it will get tough but you CAN get thru this. Even if you have after effect issues or anything that makes your life difficult after your treatments, you can still go on to live a very good full life. Its all what you make out of it.

For now, you will have a whirlwind of appointments before you settle into your treatment plan. Get a full dental check up and take care of pulling any teeth that might not get thru radiation (if you go that route?). Have a full blood workup done with testosterone and thyroid levels. Start making a list of everyone who offers their assistance, write down their name and contact info and tell them when the time comes you will let them know how they can help. Now is not the time to be proud, its ok to lean on others. I have always been a very strong, independent person and that was one of the hardest things Ive ever done, learned to lean on others. For now, eat!!!! Have all your favorites, dessert too. Its ok to gain a few pounds, if you are on the thin side push to put a few extra pounds on. If you do radiation treatments your sense of taste and swallowing capabilities may be compromised for several weeks, possibly even a few months. So eat now and enjoy all your favorites

One thing I learned during the wait between diagnosis and treatment, make your time count. Make memories with those who are most important in your life. By staying busy and making great memories with those you love it will help the time pass while you wait to begin the treatment phase.

It really does matter where you are treated. Here is a list of comprehensive cancer centers (CCC). They will use a team based approach with all the specialists together on the same page. A CCC usually has the brightest and most talented doctors using the latest technology along with tried and true treatment protocols.

CCC list

Wishing you all the very best with everything!!!

Scott,

Its not a question of "if", its "When" I get through this. You have every right to be scared. You are facing a lot of unknowns at this point. Its probably the worst part of the whole experience. Get your support team together and surround yourself with positive people. You will be able to do great things after this is done. Your life will change and you may notice that your life will be more fulfilling. Right now, hanker down, absorb the information and get a second opinion. Listen to the guys who posted before me to go to a healthcare facility that specializes in this type of cancer care. There are links on this site that list the facilities near your area. I was diagnosed on 11/7/13 and had my surgery on 12/26. BEFORE I made any moves, I made sure that I was comfortable with the treatment plan. Definitely post any questions you may have on this site. Its a gold mine of information. One last thing....YOU GOT THIS!!

Scott,

Your post sounds eerily similar to my early thoughts and posts. I had a hard time early on, but looking back, I agree with the advice from fish. Go after it, stay and stay positive. Accept help from the family. My kids are a bit older, but I encouraged them to keep on with their lives as they supported me and we are close than ever. Hard to know your professional situation, but I am sure that will work itself out.

May be hard to do, but focus on getting better and you will retain your Superman title.

Best wishes.

Scott, your cancer sounds the same as mine. I am assuming it is under your oral tongue not down your throat (base of tongue cancer is often found there).

That said it's likely NOT HPV related and it sounds very much like your dr. is on track, however - a few things to think about.

If it is non HPV - then it can be an aggressive cancer. The NORMAL approach to this type of cancer is excision (often with a neck dissection with removal of a number of lymph nodes - often high 20s, to 40s - depending on what your CT scan says - and a clean CT does NOT mean that it is not in your nodes... this cancer can seed there and be too small to be detected on a scan - in other words - its microscopic). Often this will pop up after the primary is removed. That is why most ENTs who are experienced at dealing with tongue cancer of this type do a Neck dissection as well (this is NOT common practice with HPV related Base of tongue, or tonsil cancer)

You want to be at a ccc - this important as they have a team approach to treating you and often have other things available - dental ocology, radiation, and chemo - a hope lodge if it is out of town. I know a lot of hospitals are great and offer all three - but ccc's do cancer exclusively so they know what they are doing. Plus they also have clinical trials etc..

If it is the size of a dime chances are your dr will be removing double that size. Is he/she grafting it? My tumor was approximately an inch long by half an inch deep. They removed a third of my tongue and grafted it. I am a few years out and speak clearly and have only a small lisp at night when I am tired. I have also had radiation and chemotherapy. I had one node involved, that did not show up on any scans. My dr. told me from the outset that he was removing a large portion of my tongue, and 40 nodes despite a two clean cts and a clean MRI... and I am GRATEFUL.

I love the fact that your surgery is so fast. That's awesome...

do educate yourself. You are your own best advocate.

welcome, and hopefully your scans are good.

Scott,

I am sorry you are going through this. Your post brought back memories I had when I first found out I had Cancer. I also found the hardest part was telling my 5 kids and wife. As I had never smoked, did not drink, I never worried about Cancer.

You are correct about life insurance. You will not qualify.

I also felt guilt having to spend money on my own healthcare that took money out of college accounts. With a large family, I hated spending money on myself instead of the family. This guilt was purely mine, and it made my wife mad when I expressed my guilt.

Looking back over my past 1 1/2 years since I was first diagnosed with Cancer, I am encouraged. My life has changed, but in many ways it is the same. I was off work for only two months recovering from my surgery. I was able to work full-time during radiation, and post radiation side-effects. It was hard, and I hope and pray I never have to go through this again, however we all do what we have to do to beat this terrible thing called Cancer.

You will get through this. It sounds like you have a great support system. Just try to keep your Spirits up, keep positive. Do not be afraid, or vain like me, and ask for help when you need it. It may get rough, but it will also get better.

Best wishes and prayers.

Eric

Scott, Welcome to OCF, glad you have found these forums, sorry you had to my friend.

Rest assured that you are among people who have traveled a road very similar to the one you find yourself on now and are here to help you thru this experience.

I was diagnosed, six years ago as of 1/23, at thirty-three years of age, with a 28 year old wife, and two little boys, 4, and 7. The hardest thing I've ever done (and still even after treatment) was to tell my Seven year old I had cancer. His was response was "But daddy, I don't want you to die." Those words and the image of my sons face have been burned into my skull ever since.

I used it as motivation, to fight, to keep fighting. My favorite quote ever is in my signature, and my "why" is my family. My boys weren't, and still aren't ready for me to leave them�as their father I still have a few lessons to share with them. So I fight, every day.

It's a powerful motivator my friend, but my advice is to focus on what's right in front of you. The best advice anyone can give you after diagnosis is to get the absolute "best" medical advice available to you (and trust me everyone and their mother will give you advice, most of it bullsh*t).

NCI Designated CCC's have higher survival rates in cancer as they see more cases. US News & World report puts out a great guide every year ranking the top programs in the country, getting a second opinion from the top program in your area would just be prudence. After choosing your medical team, the only thing you can control is your attitude, and your nutrition, the rest is up to how your body responds to treatment.

Attitude and nutrition are just as important as your medical team. A large percentage of cancer patients die of either malnutrition, or infection..which is helped along by the malnutrition as the immune system isn't getting enough nutrients to fight them off.

Focus on hydration, and eating as much lean protein as you can ingest, as protein provides your body the amino acids it needs to throw at your immune system, and keep vital lean body mass. Keeping yourself as stress free as possible to help lower cortisol levels, which will help your immune response. You have an amazing resource in OCF's website and forums. The patient advocates on these forums have given you great advice already and are here with an ear when you need to vent�and you will need to vent

Surround yourself with positive people, and don't be afraid, or too proud, to ask for help. Nobody gets through this crap alone brotha.

Keep your chin up, you got this thing.

E

Reminds me of the song by Allison Krause "when you say nothing at all" hope your computer gets better soon Eric

Thank you for the mail, the surgery was changed to ENT consult. She told me I need a bilateral neck dissection and remove of tune tumor. Very scary details ~ 6 to 8 weeks out of work? I am serious when I say I thought I'd go back the next day. :-/

The posts on this site tell me I am doing this wrong. Need a more specialized group.

TY

Scott,

What is your actual diagnosis? It would help to give you better replies. Where on earth did you get the idea you would take ONE day off work to get this "fixed" and be back to work the next?

Do start reading up all you can and asking a lot more informed questions to your doctors. Maybe you know a lot more than you are posting here but it seems like you need to get ahead of this sooner than later. Good luck, don

Yup... Sometimes we minimize things as a protective instinct... (oh it's not that bad... It will be over quickly...) cancer has the ability to paralyze.

Everyone is familiar with breast cancer etc... since some of the more widely known cancers are at the very forefront of the news. They are the ones sensationalized by the news as being big killers etc..

So what is a small spot on your tongue/cheek/tonsil going to do? Right? That can't kill you... remove it and get on with your life.

Guess what... I think the cure rate for breast cancer is in the high 80-90% now. Oral cancer? That little .5 inch sore (some of which don't even cause pain) that seems to be a stage 1 or 2 can be amazingly aggressive and has about a 50% mortality rate.

Since most of the world is so uneducated about oral cancer no one realizes any of this.

Also because it is your head and mouth it has a MAJOR impact on your life. Sometimes depending on the location - cheek, gum, jaw - it can be disfiguring - tongue? Can cause speech, eating (taste and mobility of the food) and swallowing issues. (there are also many social issues that stem from this... when we have parties, when we go out, when we socialize we do a lot of what? eating/drinking/speaking... All of which can be compromised by treatment)

Radiation to these areas has a LONG TERM EFFECT. (dental - diet - swallowing - pain - fibrosis - necrosis of the jaw)

I'm not saying this to scare you - and the 50% statistic is just that... a statistic. You are young, and in good health. With the right dr.,right hospital and treatment you should come out of it okay.

But the wrong dr., wrong hospital, and treatment can cost you immensely.

Point in fact. I go to a yoga studio. The owner is on my facebook. My father in law was dx'd with esophageal cancer this fall - I made sure he was seen at my ccc - so I'm sitting there waiting for him to finish rads one day - I am playing candy crush pretty much ignoring my surroundings when it started up the woman next to me laughs I look over and smile and realize it is the owner of my yoga studio. We started chatting. Her husband got some kind of half assed treatment at another hospital. Essentially - he was dx'd with the same cancer you and I seem to have. The dr. removed the tongue portion only. sent him home telling him he was cured. They go to florida for a 2 months. He's there and a node pops up. They come back the dr. looks and says oh.. he's going to need radiation and chemo. Then I am not sure how this came about they set up some odd treatment plan that involves radiation broken in two parts (with a two or three weeks off in the middle) and then followed by chemo????? (not sure what treatment guidelines this dr. was following but I have never seen a treatment plan like that EVER. Radiation is most effective with NO breaks in treatment. If it is an aggressive cancer then it should be coupled with chemo (chemo makes it the cancer more responsive to radiation). I have heard of induction chemo then a follow up with chemo and rads. But never a broken up radiation followed by chemo. EVER. (plus the dr. told him not to bother stopping smoking - to pick his battles - are you kidding me??? whether he smokes has a direct impact on his 02 levels which effects healing, circulation, and treatment.

Then the dr. gave him 6 months to live and set up his rads out of house (at the CCC)so essentially in he's a patient of a non CCC dr. but receiving radiation at the ccc)

I told her to get a second opinion but at this point it was too late as they'd started radiation. Though they did see the surgeon who said there wasn't much he could do at this point.

Education is the most important thing you can do for yourself. KNOW WHAT IS NORMAL TREATMENT, ask questions if what you are receiving isn't standard (you need to look this up yourself - check out the treatment guidelines for your stage and type of cancer with the national cancer institute). Know your full diagnosis and involvement. IE: Oral tongue cancer, stage -I-IV, T2N1MO (t- tumor size - N - nodal involvement (1-1000 or more) - M - distant mets (has it spread elsewhere outside of the localized area (head and neck)?) Find out it's differentiation (how aggressive is it - Well differentiated (this is okay - as far as cancer is concerned - it's moving and growing but at a reasonable speed) to poorly differentiated (this is bad... highly aggressive moves and spreads quickly))

Plus there area lot of extraneous thinks to consider - if radiation and chemo is likely going to be part of your treatment (if you have nodal involvement it should be) then you will need - a hearing consult (for cisplatin - a common chemo used) and a dental consult (to see if any teeth need pulling - and to have flouride trays made for any remaining teeth), plus meeting with a dietician wouldn't hurt.

For now... are you getting a graft? and if you are having a bilateral neck dissection you need to know that you will be stiff and numb and there will be swelling. When they remove nodes they remove the pathway for your lymphatic fluid - this means that fluid has no where to go. So you will likely have swelling. (somewhere down the road you if you have had a clear scan and are considered cancer free - seeing a lymphatic masseuse will help rebuild those pathways and minimize swelling) You will need to get physio involved as to do a neck dissection they cut the neck muscles and this totally screws up your shoulder(s)- I couldn't raise my left arm above my waist after surgery. But with phsyio I recovered quickly and am good now. I am still stiff and numb in my neck region from the bottom of my ear to my collar bone and from behind my ear to the midline of my neck and it is likely permanent. The plus is numbness is pain free even post op.

A neck dissection despite sounding daunting is a good thing. This cancer generally goes to the nodes next, from there it has access to anywhere in the body (kinda like a subway espress line) the lungs being a favorite next-stop location.

What to expect with this surgery? if they rebuild your tongue - you will have a trache (likely) for a few days. A feeding tube through your nose (they don't want you eating for about 8 days) an IV for meds, a catheter until you can get up to go to the bathroom, and a donor site for the tissue for your tongue - if they take the tissue from the wrist - you will likely have another donor site on your leg for skin to cover your wrist. A nasty assed scar on your (leg, or wrist) from the main donor site and you will be missing a vein adjacent to the scar as that is where they get the new blood supply from.

For the bilateral neck dissection there will be two drains (or maybe three) to help drain the fluid. These will come out in a few days once they dry up.
This is all with regards to non HPV cancer, as I stated in my previous post HPV+ cancer has a different treatment regiment that generally doesn't involve a neck dissection.

I hope I haven't panicked you or totally freaked you out. This was meant to inform you. There are some cancers that aren't hard core (thyroid, a slow colon cancer) but the reality is - a cancer is a cancer. Any kind can kill you. We've had stage 4 survivors here and stage 1's who are no longer with us. There are so many variables. Bottom line it's cancer - it's important. It shouldn't be all consuming but it should be given it's weight in consideration. Educate yourself so you can advocate for yourself. knowledge is power. Even the best dr. on the planet cannot advocate for you the way you or a family member or loved one can. They have thousands of patients to look after - but you and your family have only one you - so do what is best for you.

hugs and good luck.

Thank you

where did my post go?

Edit: Scott, I deleted all your empty posts. I hope you get your computer problem solved so you can post normally...Tony

It's hanging out with Eric's lost posts.

Scott,

It's a server bug and not your computer's issue. Brian has stated that the software vendor is working on a solution for these forums. It's frustrating to be sure, and doesn't make me feel like taking any time to write up a response only to see it vanish.

I keep them short and sweet, and hope for the best

Scott -
1) Stay in your "Fix-it" mode (aka "fight mode")! You Will get through this! When is your consult? It would be really good if you could take someone with you to your next appointment and make sure you have a list of questions ready. You can check back with them later about what was said.

2) It would help if you developed a signature line so we would know what has already happened with you. Just go to the top of this page where it says "my stuff", profile and scroll all the way down to the signature box and fill in whatever you want. If you need help with abbreviations, just go here:
http://web.utk.edu/~aalix/abbreviations2.html

3) Eric and others: I think the server bug only attacks the really important people. Ever since I quit "copy and pasting" I've had no problem.

[quote=Scottdad]where did my post go?
I hope you get your computer problem solved so you can post normally...Tony [/quote]

Funny. REAL funny. Probably more so with newbies.

it is special characters that cause it, it is not random. For some reason they create a code issue that the board rejects. So please try and use a minimum of them as my favorite three periods in a row at the end of something to indicate that there is more unsaid to the thought triggers it every time. Apostrophe s also occasionally cause this frustrating BS. I can't wait to have this solved. It makes us look incompetent as an organization. I wish it was our software and that way we wouldn t be dependent on some outside firm to get their act together.

That's very helpful. (notice I did not use an exclamation point, but the thought is there). I noticed your post which is complete except for spaces replacing apostrophes. So if we just leave out all special characters we should be ok. Thanks Brian (exclamation point).

Now I totally have an excuse for horrible punctuation! Hahahaha

Unforeseen issues always come and go, it is the way they are communicated and handled that make the organization. With that being said Brian, OCF looks just fine

I tend to share a little too much anyway